MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Saturday, 27 February 2010

I can now reveal what you've been waiting to know. But first it was a good afternoon yesterday at our MNDA meeting. After a few techy problems, David Batt-Rawden talked about gardens which are wheelchair friendly, and extolled the virtues of our old friend, the Beamer Tramper, and what was new to some, the sand-managing beach wheelchair - which I could have done with in Norfolk last year. And then Sue Williams-Bradley talked about disabled friendly gardening - including table-top gardens, which enable wheelchair-users to get their feet underneath the soil... a neat idea, though I'm not sure how many of us would think about them. Personally I'll leave the gardening to Jane. Of course the most important bit was spending time with friends in the same boat. It was nice to get to know David better, who's an impressive carer of his wife Susan. Some of us will be going to the MNDA Spring Conference at Newport in April.

Stephen's pointed out in a comment on 'Media Bias' that the BBC did a good report on Dignitas last April which is still on line. I must acknowledge that so that I'm not biased myself.

This afternoon I was a guinea-pig..... at the MRCP exams in Oxford. Doctors who are trying to get their Membership of the Royal College of Physicians (the advanced general medicine - GP - qualification) have to examine you (+ a number of others) and then report to their examiners what they've found. They're given a minimum of information (eg that I have a neurological condition and can barely walk) and are told to examine my lower limb and cranial nerve function (or something like that) in six minutes. There were five of them and were all terribly polite, calling me 'Mr Wenham'. My one complaint is that when doctors tickled the sole of my feet to test my reflexes I'd call it more of a scratch. There were medical students there as well, helping, who took advantage of having us there, and they by contrast still seemed to know what tickle means.

I suppose the most exciting test most of them carried out on me was pricking me all the way down my legs and feet with a 'sharp' pin! One of them asked me to say, 'Baby hippopotamus'. I'm afraid I just laughed. 'You must be joking!' So she tried, 'British constitution' instead - which I enunciated carefully. But she was on to one of the important symptoms. It was interesting how many of the candidates had to be pushed by the examiners to mention my speech, which is of course one of the obvious symptoms. I suppose it was just too obvious. Anyway, the moral is, nothing is too obvious. Well it was good to feel I could do something positive with this wretched illness, not least by telling the students how PLS had affected me. I think all the candidates got the generic diagnosis right (though one favoured MS); not surprisingly, since PLS is so rare, none of them identified that, but most got the fact that both upper and lower neurones were affected. One of them, I thought, was outstanding - very quick to identify the relevant symptoms and clear on the diagnosis. The examiners agreed with me. If she's your GP, you should be all right. You can see why I couldn't say in advance what I was booked in for; it wouldn't have done for word to get out!

The examiners looked at what I was reading, Lucy Winkett's book. 'The Archbishop of Canterbury's Lent book,' read the waggish Irishman. 'Does he know when he's getting it back?' Ho, ho!

As for the rugby - well, a bit of a wipeout for mainland Britain, wasn't it? Oh dear.

Friday, 26 February 2010

About a year ago I was rung by Mark Cato, who lives near Cambridge. He has MND and wanted advice on starting a blog - from me! He's ended up with an all-singing, all-dancing site, and 1000s of hits. Recently, I read, he gave an interview to a local journalist to get it more publicity but the article ended up highlighting his intention to end his life, when the time comes, surrounded with his family enjoying a bottle of Bollinger. He's a bit dischuffed about the emphasis given to assisted suicide - which of course reached the nationals. Of course he shouldn't have been surprised.

I've been reflecting on the way the media, and strangely the BBC in particular, seem much more interested in stories supporting the case for assisted suicide than those opposing it. Of course it's easier to tell heart-wrenching stories of the 'you wouldn't let it happen to a dog' sort than I've taken the decision to die in a hospice sort. Even if you balance up comment, there's no getting away from the power of story, and especially enacted story. That's why Jesus the great teacher used parables and actions so much. How many documentaries or dramas have you seen on TV about people who've decided not to end their own lives? I can think of two 3-minute clips in programmes where they felt like token gestures. Compare that with the coverage given to Debbie, Panorama, Dimbleby lecture, A Short Stay in Switzerland... It looks like editorial decisions are taken by people who take the aptness of assisted suicide for granted. I'm waiting for a reply to a letter I wrote to Mark Thompson on the subject. I'll be interested in what he says.

This afternoon, on a more positive note, we're off to the local MND Association meeting in Oxford - about disabled-friendly gardening! It will be nice to see some of our friends again. And then... France v Wales rugby!

Thursday, 25 February 2010

I think the Director of Public Prosecutions has done as good a job as one could have expected considering the impossible task he'd been given by the Law Lords. He's taken out all reference to the disabled and terminally ill - which means that the likes of me won't have less legal protection than anyone else. He's taken out reference to families, because it was naïve to ignore the fact that most abuse of young and old happens within families. He's emphasised that the law has not been changed and the mitigating factors should not be regarded as implying immunity from prosecution.

The DPP's press release summed them up:
'The six public interest factors against prosecution are:
• The victim had reached a voluntary, clear, settled and informed decision to commit suicide.
• The suspect was wholly motivated by compassion.
• The actions of the suspect, although sufficient to come within the definition of the crime, were of only minor encouragement or assistance.
• The suspect had sought to dissuade the victim from taking the course of action which resulted in his or her suicide.
• The actions of the suspect may be characterised as reluctant encouragement or assistance in the face of a determined wish on the part of the victim to commit suicide.
• The suspect reported the victim's suicide to the police and fully assisted them in their enquiries into the circumstances of the suicide or the attempt and his or her part in providing encouragement or assistance.'

Although the motive of compassion seems reasonable, it still seems to me rather subjective. It means more than feeling sorry for someone, or pitying, or worse not liking what you see. It means literally: 'suffering with'. I think that means sticking with someone who's suffering to the end. Compassion cannot mean killing.

Debbie Purdy was up-beat about the guidelines on the news today, but I suspect it was more rhetoric than real triumph. She was a bit ambiguous in the interview I saw. Although she said she and Omar will now be all right when/if she took herself to Zurich, she then adjusted 'will' to 'may', because actually the law hasn't changed and the DPP will still consider all cases. I think she tacitly acknowledges that by promising to carry on the campaign to get the law changed. The Euthanasia campaign will run and run, I'm sure. It's important that others stand and stand and stand against it. I was glad to hear that Gordon Brown had been brave enough to speak out in a clear and well informed opposition, and was very impressed by an article by Professor John Keown, author of 'Euthanasia, Ethics and Public Policy' (CUP) on why we shouldn't let it in by the back door ( http://www.telegraph.co.uk/comment/personal-view/7313579/Assisted-suicide-must-not-be-legalised-through-the-back-door.html ). Opinion polls and emotional (tear-jerking) stories - which go together - are no substitute for informed and humane discussion of the issues.

Has anyone noticed the coincidence of the protagonists' Christian names of Chelseagate? John Terry and Wayne Bridge are at loggerheads, we're told, over their promiscuous past. I don't know the facts of the case - I don't suppose many do. But today the BBC reported Wayne's refusal to join the England football team with John in it. 'This team ain't big enough for the two of us.'

On another more cheerful sporting note, I've enjoyed some of the Olympic events, particularly the Ski Cross events - a mixture of skiing, racing and dodgems over jumps - and by contrast the Ice Dancing Final of Tessa Virtue and Scott Moir - a breath-taking mixture of ballet and skating. That was incredibly expressive and passionate and skilful dancing to Mahler. Beautiful.

Sunday, 21 February 2010

I've just had the pleasure of watching Bristol City winning at Ashton Gate against West Brom. You don't often get to see their matches on TV. To be honest I'm not a fanatic, but Bristol City comes as near to being 'my team' as any. Bristol was my home. I watched them play Liverpool when I was at school, I imagine in the FA or League Cup. They lost, I think. They've been slipping recently, but hopefully this is the start of the recovery.

To be honest, it was a bit of a relief after all that rather tedious curling, which seems to have dominated the Winter Olympics coverage. It's very slow-moving massive marbles on ice. I think we have to watch a lot of it, because Britain's reckoned to have at least a chance of a medal. At least we have one gold - good for Amy Williams in the incredibly scary skeleton tobogganing! A shame it contributes to the jibe that Team GB is good only at sedentary, or in this case lying-down sports (rather like me, come to think of it!) - but credit where it's due.

Another party on Saturday night in honour of our friend Maureen. We must have been enjoying it, because we didn't get home till way past my bedtime. Well, there were a lot of friends there.

An eventful week ahead: the Director of Public Prosecutions is due to issue his guidelines on assisted suicide, and no doubt the media will be full of it - again. Then we have our local MNDA meeting - about gardening. And the next day - oh no, I can't tell you about that yet. Sorry.

Friday, 19 February 2010

I gather Newsnight will include discussion of assisted suicide tonight. Alison Davis, who I've got to know through my book, and her carer Colin, will be on. She has a remarkable story. She wrote about it after the Lynn Gilderdale case in a letter to the Independent:

'I use a wheelchair full-time, having spina bifida, hydrocephalus, emphysema, osteoporosis and arthritis. Like Lynn, I desperately wanted a child, and had to come to terms with the knowledge that I never would. I have severe pain every day, and, as with Lynn, morphine doesn't always alleviate it. I also have crushed and fractured vertebra, caused by my osteoporotic bones, which means additional pain. Typing this causes even more pain, due to arthritis in my fingers, wrists and elbows. But writing this letter is important, despite the pain.

'Twenty-five years ago, I, like Lynn, decided I wanted to die, a settled and entirely competent death wish that lasted for 10 years. During those years I attempted suicide more than once. On the occasion I best remember, I was treated against my will by doctors, who saved my life. Then, I was very angry with the doctors who saved my life, but now I'm extremely grateful. Yet because of the requirements of the Mental Capacity Act, and the Director of Public Prosecutions' new guidelines, if similar circumstances obtained now, I would be left to die.

'Had someone taken the apparently "common sense, decent and humane" decision to end my life all those years ago, no doubt a jury would also have given my "helper" a conditional discharge, if that.

'But I would actually have missed the best years of my life, notwithstanding pain that is worse now than it was when I wanted to die. No one would ever have known that the future held something better for me, not in terms of physical ability, but in terms of support and the love of friends who refused to accept my view that my life was "over".'

I've never met Alison, but I look forward to seeing her tonight at 10.30, on BBC2.

Thursday, 18 February 2010

Well, I Choose Everything - first draft - is complete. I've sent it to Jozanne to see whether she's happy for it to go to the publishers. I think it's quite interesting. Actually I'm more enthusiastic than that. I reckon it will be really helpful for Christians understanding illness from the inside. To celebrate finishing we made for the Cornerstone and broke our Lent fast (already) with some mallow tiffin and coffee. To offset that I also bought the Archbishop's Lent book, 'Our Sound is our Wound' by Lucy Winkett. I enjoy her Thoughts for the Day on Radio 4. She's Precentor at St Paul's Cathedral (or something like that), which means her expertise is singing - she was trained as a musician.

Talking of musical talent, today I was sent a YouTube link about Patrick Henry Hughes. I'll not spoil it for you, except to say it's a remarkable story of a father's love and of unforeseen potential. It should also be a warning against writing off any handicapped baby. (http://www.youtube.com/watch_popup?v=9xwCG0Ey2Mg)

Monday, 15 February 2010

Perhaps he didn't know St Valentine's Day was over. That must be his only excuse. But at 3.45 AM, yes AM, he was at it. Yes, Romeo's back - not at full throttle, but like an orchestra tuning up. (By the way, 'throstle' is an old word for 'thrush'.) My only consolation is that it might be a sign that spring is on its way. Oddly too, on Radio 3 this morning they played Prokofiev's ballet suite Romeo and Juliet.

A lot of us with MND are a bit tired of being cooped up by the snow and then the cold. Spring sunshine and warmth can't come too soon, as far as we're concerned. All the same I'm enjoying the Winter Olympics, beside my fire! The less said about the weekend's rugby the better; it wasn't a great spectacle, I thought - though the end of the Wales-Scotland match was unexpectedly dramatic.

Songs of Praise was back to its prissy worst format (red roses, King's Singers in PINK ties...), but was totally redeemed by one interview with Peggy, of The Archers, June Spencer. In the series, she's married to Jack Wooley who has Alzheimers. In real life, her husband also had the same disease, and then a stroke: 'I remember saying, "Why me?" and God said, "Because, with my help, you can cope. And that's it.' And he did help me, and I did cope, and looking back on it I realise that I couldn't have coped without his help.' And then she went on to talk about the resurgence of love she experienced in his illness. It's a wonderful jewel of an interview and well worth listening to. I hope the BBC repeat it if they do one of their retrospective SoPs in the summer. (You can find it about 22 minutes into the programme: http://www.bbc.co.uk/iplayer/episode/b00qxypn/Songs_of_Praise_Valentines_Day/).

Saturday, 13 February 2010

Yesterday I had a comment from Brian, which I think is worth reproducing here. It just brings the reality of Afghanistan nearer home:
We are familiar with the repatriation to the UK of the bodies of our service men and women killed in Iraq and Afghanistan. They are flown into RAF Lyneham and, after a private funeral service there for family and friends, taken by road to the John Radcliffe hospital in Oxford. At various places along the route people gather to pay their respects as the cortege passes. As I had learned that there was to be a Repatriation today I obtained the following details from the Defence Academy here in Shrivenham: WO2 David Markland (36 Engineer Regiment), Corp. Johnathan Moore and Pte. Sean McDonald (1 Scots); Flypast over Wootton Bassett 11am, Family Service 12 noon, Cortege leaves RAF Lyneham at about 1.30pm, then passes through Wootton Basset, Gable Cross Police Station (A420), B4000 (Bridge over A420), UK Defence Academy (A420), Faringdon Folly Lay-by (A420) - then on to Oxford, passing St Anthony of Padua RC Church at the JR Hospital. As the B4000 bridge is only about a quarter-mile from home I decided to go along and join about half-a-dozen others who had gathered there to pay their respects at the approximate time the cortege was expected (around 2.30pm).
At about 3pm a lone police motorcyclist came along with blue light flashing, followed by another about 200yds behind, then a police car, then three hearses with coffins draped with the Union Flag, then an unmarked car and a final police car. As the procession approached, all the traffic on the opposite side of the road came to a standstill until the cortege had passed. It was an incredibly moving experience - indeed, I broke down recounting it to Carol and even now have a lump in my throat.

Thursday, 11 February 2010

Our new sofa arrived today - specially made in South Wales by SofaSofa. It's not quite as long as the freebie we had before, but it fits in well. The dog likes it.... It was delivered by two young Welsh guys, who were very efficient. 'Hope the rugby goes better for you on Saturday,' I said. 'We don't talk about it unless we win,' he said. So I carried on. 'Shame about Alun Wyn Jones.' 'Stupid. Right in front of the referee's nose. And he's been selected again for this weekend when someone who played well has been dropped!' We agreed it was disgusting. Well, hope they do better this weekend.

Wednesday, 10 February 2010

This is going to be the last Philadelphia I eat. I'm furious with Kraft, the double dealers. When I was a lad, one of the most romantic sights lay between Bristol, where we lived, and Bath. It was a special treat when we'd drive to Saltford and take a rowing boat out for a couple of hours. On the way we passed the red brick Fry's factory at Keynsham - which was where they made Fry's chocolate cream and turkish delight and the small round chocolate creams with different coloured creams - I loved them. I don't remember going round the factory, but we did sometimes have factory seconds.... Cadbury's with whom Fry's amalgamated in the 30s, I think, had decided to close the Keynsham factory and transfer production to Poland. And then along came Kraft, the American food business, with their take-over of Cadbury's. They would, they said, keep the factory open after all. Whether that won them friends among British investors or not is a moot point. Anyway within days of their winning the battle, they've just announced they're going to close it after all. They didn't know how advanced things were - they said. Oh yes? Pull the other one! Don't tell me your advisers don't do their homework in minute detail. So I'm cross, very cross. They've raised and then dashed my childhood dreams. Cruel.

Tuesday, 9 February 2010

How could I have forgotten - except they weren't that exciting: the 6 Nations' Rugger began on Saturday? I'm not sure whether England would have beaten Wales were it not for that rather stupid sticking out of his leg by Alun Wyn Jones. But there we are! That's the price you pay. The Saturday matches were rather scrappy, but the Sunday game was a different matter. France were much more exciting, quick handling and crunching defence, and to give them their due Scotland battled like Braveheart. They're my favourites for the championship, the French, that is - which come to think of it is what Bruce Forsyth says to the worst dancers on 'Strictly'; but I don't suppose that'll worry the French team. Somehow I can't imagine them watching....

And this is an historic picture, recording Jane well and truly into the cyber age. While I'm writing this, she's scanning the web for new recipes. Happy days!

Monday, 8 February 2010

... writing, but here are a few thoughts from last week. Had a great day on Sunday (not yesterday), as we had lunch with great friends, Ian and Shelley, and their two youngest sons who are a pleasure to be with, and then came home to find a message on the answerphone from two other top friends, Anthony and Ruth, who were just 'passing' on the M4, wondering whether they could pop in. We managed to reach them before they'd got too far, and so we had a lovely hour with them. There's no other word for friends like those four than a blessing.

Anthony and Ruth have been working all hours receiving and despatching medical supplies to Haiti, through their amazing charity, International Health Partners UK. I've probably written about it before. They work at getting pharmaceutical companies to donate in-date stock and then with aid agencies distributing them at no cost. It's such a good concept, but such hard work. I saw them mentioned today winning one of BA's opportunity grants - which is well deserved and will be well used
(http://www.telegraph.co.uk/sponsored/business/opportunitygrant/6469188/British-Airways-UK-Opportunity-Grant-competition-winners-business-awards.html).

The other good thing that Sunday which in fairness I have to mention is 'Songs of Praise' (since I've slagged them off in the past) which came from Peterborough. Contemporary and some trad worship, real people enjoying worshipping, and talking about their lives. And actually this Sunday wasn't bad either, from Southwark Cathedral of all places, a few choristers' ruffs in evidence, but mainly a whole variety of people again really worshipping with a variety of hymns and songs. So I give Tony Nagri and the Beeb their due - and hope we don't revert to the travelogue/concert formula.

Then on Monday there were the two BBC programmes about assisted suicide, Panorama about Kay Gilderdale, who was acquitted of murdering her daughter Lynn with ME - which wasn't exactly a documentary, with its background music and wheeling seagulls and of course lots of inevitable emotion. I was struck by Chris Woodhead (who has MND and wants the option of choosing when to end his life) whose view is that changing the present law would actually make things worse - which I think is right. Then in the evening was Terry Pratchett's Dimbleby lecture, Shaking hands with death. That was another emotive essay. He'd obviously learned my father's maxim about preaching, 'Placere, docere, movere.' Please, teach, move - in that order, i.e. win over your listeners, inform them and then persuade them to action. It seemed a persuasive case for assisted 'death' as he chose to call it, when you listened to it, but afterwards you realised what he hadn't said, for example, about the effect on others (I think Sue has already made a comment on this blog to the effect that 'No man is an island') and the culture of fear rather than of hope. I noticed he said, 'If I knew that I could die at any time I chose, then suddenly every day would be as precious as a million pounds.' Hang on, I thought, every day is already infinitely precious as far as I'm concerned. And his resounding aphorism was, 'My life, my death, my choice.' Since when, I wondered, did any of us choose to enter life? And why are we so frightened of the unknown, of losing control, of chance? I'd rather, 'My life, my death, my adventure!'

And then, after a quick read of my bro's rather good short manuscript on whether Paul changed the message of Jesus as Philip Pullman is preparing to claim (again... yawn!) - to which the answer is a considered and well informed and argued 'No', the rest of the week is was nose the laptop working on the next book with Jozanne, I Choose Everything. We're aiming to finish the draft this month.

Tuesday, 2 February 2010

'Really old like forty five' is a new play by Tamsin Oglesby, just opened at the Cottlesloe Theatre on the South Bank. I heard about it on the Today Programme this morning. It sounds very relevant and quite chilling. The publicity about it says, 'There are just too many old people. As a government research body seeks to deal the problems of a maturing population, a family addresses its own. Lyn's memory starts to go, Alice takes a fall and even Robbie has to face the signs of ageing. Relations are put to the test across three generations. As are those who enter the increasingly sinister world of state care. 'Tamsin Oglesby's furious comedy confronts head-on our embarrassment and fear about old age. It exposes a society in which compassion vies with pragmatism and, by asking unequivocal questions, it comes up with some extraordinary answers.' I gathered that 'euthanasia' was part and parcel of the sinister world.

Baroness Warnock and Tamsin Oglesby were both interviewed, and what most struck me was Mary Warnock's bald and, to me, chilling statement that the elderly were 'a burden'. Which is not a neutral word. A burden is a nuisance, something you want to get rid of - the archetype in literature, I suppose, is Christian in 'Pilgrim's Progress', who was mightily relieved when his burden rolled off.

Is it a coincidence that a recent news item was about changes in demography in the countryside and local authorities telling the government it had underestimated the future cost of care for the elderly by £1/2 billion per annum, if I remember right? Certainly the Baroness seemed to relate economic productivity to personal value. It's quite a turn round from respecting old age for its wisdom and for our inheritance. Baroness Warnock was introduced as 'the euthanasia campaigner'.... To give her her due, I don't think she was suggesting bumping off all non-economic units of production, and no doubt she would choose assisted suicide for herself. However you can see how easily we could slide into the nightmare world of 'Really Old'.